Mental health and stigma in persons affected by Hansen’s disease and their families in rural Sitapur, India

TL;DR

This study explores how stigma affects mental health in people with Hansen’s disease and their families in rural India, highlighting the need for education to combat stigma.

Contribution

The study provides novel insights into the mental health impacts of societal stigma on Hansen’s disease patients and families in an endemic region of India.

Findings

Stigma in the form of stereotypes and discrimination was found to contribute to anxiety and depression among patients and family members.

Family support emerged as a protective factor against the negative effects of stigma.

Non-disclosure and self-distancing were common coping strategies used by participants.

Abstract

Psychological problems are common among persons affected by Hansen’s disease, a chronic but treatable disease that remains endemic in India despite available and effective treatment. Stigmatisation can also lead to delayed care-seeking, which can impede eradication efforts and negatively impact the physical and psycho-social wellbeing of the affected person and their family. This study aimed to examine how stigma in society affect the mental health of persons with Hansen’s disease and their families in endemic villages of Sitapur, India. Semi-structured interviews were conducted to explore how different types of stigma experiences (internalised, anticipated, experienced and perceived) and stigma practices (stereotypes, prejudice, discriminatory behaviour) form in society and affect the mental health of persons affected by Hansen’s disease and their family members. The study was carried out in collaboration with GLRA India and conducted in an endemic district of India, Sitapur. In total, 22 participants were included with a 1:1 of persons affected and family members. Data was analysed via thematic pattern analysis using the Health Stigma and Discrimination (HSD) framework as a structure. Stereotypes and other negative beliefs about Hansen’s disease persisted, and persons affected by the disease and the interviewed family members experienced all types of stigma. Symptoms of anxiety and depression were commonly reported among both patients and family members. Misconceptions about the disease appeared prevalent among patients, families, doctors, and the community. Marriage opportunities were impacted, though segregation was limited. Non-disclosure and self-distancing emerged as coping strategies. The study confirmed the presence of stigma and mental health issues among those affected and their families. Despite misconceptions and fear of spread, family support was high which may serve as a counterbalance to the negative effects of stigma. Education and awareness are essential to combat stigma and improve health outcomes.

Hansen’s disease, commonly known as leprosy, is a chronic but treatable condition that remains endemic in parts of India, including Sitapur. Despite the availability of effective treatment, public health challenges persist, particularly due to stigma. Stigmatization of Hansen’s disease can instil a fear of discrimination in affected persons and can lead to delays in seeking care, hampering eradication efforts. There is evidence to show that depression and anxiety are vastly more prevalent in persons affected by Hansen’s disease compared to non-affected persons. However, the effects of stigma on the mental and social well-being of persons affected by the disease, and their families, remains unclear. This study aimed to explore how stigma influences the mental health of persons affected by Hansen’s disease and their families in the endemic villages of Sitapur, India.

In this study, we conducted semi-structured interviews with 22 participants, comprising both persons affected by the disease and their family members, using a 1:1 ratio. The findings revealed that stigma was pervasive, with stereotypes and negative beliefs about Hansen’s disease persisting in society. Participants, both patients and family members, reported experiencing various forms of stigma, which contributed to mental health issues such as anxiety and depression. A significant gap in knowledge about the disease existed not only among patients and families but also within the broader community and even healthcare providers. Social challenges such as reduced marriage opportunities were reported, although segregation was limited. Coping strategies like non-disclosure of the disease and self-distancing were commonly employed. However, family support emerged as a strong protective factor against the negative effects of stigma.

The study underscores the need for greater education and awareness to reduce stigma and improve mental health outcomes. Future research should focus on larger populations and assess the effectiveness of specific interventions aimed at combating stigma and promoting public knowledge about Hansen’s disease. More studies exploring the effects of stigma on persons affected by Hansen’s disease and their families should be conducted across other endemic geographical areas to improve the transferability of these results.

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